Is it me or are support groups (online or in person) either incredibly hard to find or not frequente

mikebb79

I was diagnosed in 2004 and remember trying a few different groups in person and there were a few people here and there, but no one within 20 years of my age. Now, years later, just trying to find some support as a survivor and it seems incredibly difficult, There are forums with posts from 2 years ago and maybe 20 active members a day, and not much in the way of person to person support groups for survivors from what I've seen. Maybe I'm just not finding it, but any recommendations for some good ones? Obviously this site is one of them and I will give it a try, but wanted to see if there are any others as well. Also, just curious about what others in my position have done for support. Thanks.

jimwins

Hi Mike
Hey Mike .

I haven't researched a lot of other sites but you might try posting
on the Lymphoma board here. It's fairly active and has some really
nice folks. Sometimes it's helpful to just vent there or read other's posts
so you feel less alone. Also, sharing your experiences and helping others can
be therapeutic at times.

I did find this site but have no experience with it:

Lymphoma Research Foundation

Looks like they have one on one mechanisms in place .

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission.

gloriamdeo

Hello, good questions
Hello, I just joined CSN in the hopes it would have an active community and chatroom. Things seem rather slow at the moment, but it is near midnight where I am..:)

I am particularly interested in support circles for folks in or around age 30-40s. It has seemed to me like we are a group that is neither 'young' nor 'old' yet is generally expected to be in the 'prime' of life when it comes to career and family. This can bring about unique challenges after being diagnosed with cancer..

bluerose

The low use of sites, even like this one, has always baffled me
Hi Mike. I am a survivor of over 2 decades, had non hodgkins lymphoma and this is one of the great mysteries of cancer survivorship to me - the low numbers of survivors who are on support sites. I mean there are several survivors who frequent sites like this on a pretty regular basis but with the number of cancer survivors, family members and friends who are involved with cancer in one way or another it just shocks me that more don't make use of sites like this. If you just google Cancer Support sites in general several come up but it seems that on most of them there is relatively few participants and I can't figure out why.

As a cancer survivor you know how many emotions we all go through, so many questions, and to be able to chat with another survivor is something that we all think about from time to time - someone who has walked in our shoes. We often don't get the kind of support that we really need from family and friends, not that they don't give us much needed support in other ways but as the old saying goes 'you have to have walked in my shoes' and that's where other survivors are invaluable. So why don't more seek that out online or in face to face groups, I just don't know.

I know that when I first started looking for groups face to face years ago there weren't as many as there are now with growing understanding of the needs of survivors. That's true of online support too, there are more now but they just aren't used as I thought they would be. I remember thinking years ago that I would probably never be able to get in a word edgewise because the chat rooms for cancer support would be so full with so many dealing with the illness. I was stunned to realize that there was usually no one in the rooms at all so I started to use the discussion boards instead but I still think that the real time one to one chat can be so helpful.

On this chat site it used to be that the evenings were busier in this chatroom on this site but I haven't been in there for sometime now so I don't know. During the day though with new diagnosis and those patients looking for answers to their new situations with cancer you would think they would be looking online for help but still there are just so many empty chatrooms. I am in Canada and we have a big site here like this one but it deals in more scheduled meeting times and the chatrooms are empty most of the time. It's baffling.

The only reason I can come up for the lack of greater numbers on these kinds of sites is the general feeling that perhaps chatrooms are nasty, as their reputation has been in the past on some sites but this one is different I can assure you but maybe that reputation is still out there. I know also that if you speak to some doctors about researching your illness online or in chatrooms they tend to look down on it, not giving us credit for knowing garbage from truth I guess, I don't know but that's one idea as to why these kinds of sites aren't more well visited.

Having said all of that sometimes it's not about quantity but quality and I have to say that on this site in particular you can find many knowledgeable and caring survivors who are regulars of the site.

There is one other site I would personally recommend and it's called ACOR. It's a site that functions like this one with discussion boards but I believe it's still all done through email if I am not mistaken. Check it out anywho, it has a ton of knowledge behind it and has alot of good information that you will no doubt find helpful.

Don't give up on this chatroom though. I haven't been in it for awhile now but try it at different times of the day and evening and on different days of the week till you find a group that is chatting. I hope it works for you.

Take care.

Blessings,

Bluerose

katenorwood

bluerose said:

The low use of sites, even like this one, has always baffled me
Hi Mike. I am a survivor of over 2 decades, had non hodgkins lymphoma and this is one of the great mysteries of cancer survivorship to me - the low numbers of survivors who are on support sites. I mean there are several survivors who frequent sites like this on a pretty regular basis but with the number of cancer survivors, family members and friends who are involved with cancer in one way or another it just shocks me that more don't make use of sites like this. If you just google Cancer Support sites in general several come up but it seems that on most of them there is relatively few participants and I can't figure out why.

As a cancer survivor you know how many emotions we all go through, so many questions, and to be able to chat with another survivor is something that we all think about from time to time - someone who has walked in our shoes. We often don't get the kind of support that we really need from family and friends, not that they don't give us much needed support in other ways but as the old saying goes 'you have to have walked in my shoes' and that's where other survivors are invaluable. So why don't more seek that out online or in face to face groups, I just don't know.

I know that when I first started looking for groups face to face years ago there weren't as many as there are now with growing understanding of the needs of survivors. That's true of online support too, there are more now but they just aren't used as I thought they would be. I remember thinking years ago that I would probably never be able to get in a word edgewise because the chat rooms for cancer support would be so full with so many dealing with the illness. I was stunned to realize that there was usually no one in the rooms at all so I started to use the discussion boards instead but I still think that the real time one to one chat can be so helpful.

On this chat site it used to be that the evenings were busier in this chatroom on this site but I haven't been in there for sometime now so I don't know. During the day though with new diagnosis and those patients looking for answers to their new situations with cancer you would think they would be looking online for help but still there are just so many empty chatrooms. I am in Canada and we have a big site here like this one but it deals in more scheduled meeting times and the chatrooms are empty most of the time. It's baffling.

The only reason I can come up for the lack of greater numbers on these kinds of sites is the general feeling that perhaps chatrooms are nasty, as their reputation has been in the past on some sites but this one is different I can assure you but maybe that reputation is still out there. I know also that if you speak to some doctors about researching your illness online or in chatrooms they tend to look down on it, not giving us credit for knowing garbage from truth I guess, I don't know but that's one idea as to why these kinds of sites aren't more well visited.

Having said all of that sometimes it's not about quantity but quality and I have to say that on this site in particular you can find many knowledgeable and caring survivors who are regulars of the site.

There is one other site I would personally recommend and it's called ACOR. It's a site that functions like this one with discussion boards but I believe it's still all done through email if I am not mistaken. Check it out anywho, it has a ton of knowledge behind it and has alot of good information that you will no doubt find helpful.

Don't give up on this chatroom though. I haven't been in it for awhile now but try it at different times of the day and evening and on different days of the week till you find a group that is chatting. I hope it works for you.

Take care.

Blessings,

Bluerose

Hi Guys
As a newbee to different sites....I try to find ones that fit me. I usually post questions on HN, and have learned how to navigate different sites. I don't think it's lack of people wanting to, it's maybe their not figuring it out. Glad to have found you ! Regards, Katie